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Consultation on draft report to the NHMRC CEO for ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome’ submission

ID: 
32
Personal Details
First Name: 
KYLIE
Last Name: 
MCINALLY
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Well
Comments: 
More education for doctors is required.
1b. How well does the report present the challenges facing clinicians in providing care, when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?: 
Very Well
Comments: 
Some doctors still believe MC/CFS to be psychological even though the current research has proven this not to be the case so retraining of all doctors in respect of ME/CFS is vital. Doctors used by NDIS & Centrelink should be up to date with the current research.
2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.: 
Agree
Comments: How could the recommendations be improved?: 
4.5.3 Should also include changes to the Disability Support Pension (DSP) criteria and the Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011. Also there is a significant amount of children, teenagers and young adults with ME/CFS and the under 35 year old participation requirements for DSP, places significant unnecessary pressure and stress on the sufferers. There is very little assistance for the under 35 age group or their families who are caring for sufferers of ME/CFS. GET & CBT should not be required by Centrelink for ME/CFS to be fully treated for Disability Support Pension.
2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.: 
Strongly Agree
2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.: 
Strongly Agree

Page reviewed: 23 September, 2019